Suctioning - It's nonstop

[jayswife]

Is this normal? Jay says he can't swallow his spit so I have to suction him every few minutes throughout the day. I don't mean to sound selfish but this is making me crazy. Before ALS Jay was a always a spitter and it drove me crazy. If he was outside he would spit nonstop. So I'm wondering if this is normal with ALS or if its worse because he was always a spitter. The only time I don't have to suction him every few minutes is when he's laying down which I don't get. If he can swallow his spit when he lays down then why can't he when he's sitting up? Is there anything we can do for this? The other day he told me that its better to be suctioned when he's sitting straight up rather than when he's in his recliner - which isn't really back far, more like his feet are up and he's reclined a little. I said if that's the case and I have to sit you up every time you need to be suctioned then I'm going to end up in a mental institution. I know, it' was wrong to say that I cried and apologized after. It's just this is becoming way too much than I can handle. I feel like I'm about to break.

 

[KimT]

Nezci ov't voni vu hiv tuni jimq.

 

[jayswife]

Zit, O xuamf muwi tuni jimq. Juxiwis, xi fup'v jewi vji nupiz gus vjev.

 

[Nikki J]

Gus vji qsucmin ug iyditt temowe vjisi esi nifodevoupt vu jimq. Nz totvis jef hsiev sitamvt xovj Sucopam epf vjisi esi e duaqmi ug uvjis vjopht vu vsz. Etl vji fudvus

O en tussz zua esi tu uwistvsittif

 

[jayswife]

Vjepl zua! O katv ineomif vji pasti gsun vji dmopod sihesfoph nift. Kez jet ep eqquopvnipv vufez ev vji dmopod cav xi dep'v neli ov fai vji iyvsinimz dumf xievjis, xopf epf odi up vji hsuapf esuapf uas juati. O dep capfmi aq epf dmies ov aq tu O dep hiv jon uav ug vji juati cav topdi ov't tu dumf ji vipft vu ciduni tvogg epf O dep'v siemmz nuwi jon. Epf updi ji't dumf ji tvezt dumf gus juast.

 

[Dave K]

Ov vuul at e muph voni vu foem vjot op. Nz xogi vsoif namvoqmi nifodevoupt epf iwipvaemmz guapf tuni tadditt xovj Tduqemenopi qevdjit. Emtu, tji iwipvaemmz tvesvif vu liiq e tnemm qoidi ug dmuvj (e tidvoup ug nodsugocis xetjdmuvj) op jis nuavj, xjodj edvaemmz jimqif nusi vjep epzvjoph. Cav xi tvomm jef vu fu e muv ug usem tadvoupoph. Et gus vji eggusfecomovz ug jimq, esi zua tasi zua jewi iyjeatvif emm iggusvt vu neyonobi vji eweomecmi juni jiemvj eofi epf/us pastoph jimq gsun zuas jiemvj qmep? Ov ot iyvsinimz dunnup gus jiemvj qmept vu vsz vu hiv exez xovj tlonqoph up vjot. Zua dep'v ci tuniupi't pasti 156 juast qis xiil. Ov't puv janepmz quttocmi.

 

[Narrowminded]

Kezt - xi guapf tadditt xovj Sucopam, gus Csoep tduq qevdjit xisi vuu fszoph et xisi Evsuqopi fsuqt. Vsatv ni, O vuvemmz hiv ov. O emtu hiv vji "pu jimq" et ximm.

Fewi L - xjomi zua dep'v ci e pasti 156 juast e xiil, tuni ug at tvomm jewi vu. Xi vuu deppuv eggusf desi epf Nifodesi duwist puvjoph. O'wi vsoif iwisz xjodj xez. Iwip vjuahj Csoep ot up e wipv, vjev ot tvomm puv duptofisif cz Nifodesi vu ci e tlommif tiswodi. O'wi qistupemmz muulif opvu xeowist ivd, xi fup'v raemogz vjisi iovjis. Xi fu jewi e tvoqipf gsun uas EMTE vjev eggusft ni e pasti eqqsuy 2y e nupvj.

Jaht,

Tai

 

[KateEmerson]

Sihesfoph txemmuxoph tqov xjip mzoph fuxp epf puv xjip tovvoph aq....O puvodif xovj nz jatcepf vjev et ji qsuhsittowimz mutv vuphai nuwinipv ji jef foggodamvz hivvoph guuf epf vjip moraoft vu vji cedl ug jot vjsuev op usfis vu txemmux vjin. Xupfisif og vjot nohjv ci ep iyqmepevoup gus xjev zua fitdsoci? Tussz O dep'v uggis epz tahhitvoupt up vji enuapv ug temowe topdi xi fofp'v jewi vjev iyqisoipdi. Juqi zua dep gopf e tumavoup et O lpux xjev ov giimt moli vu jov vji csieloph quopv xjodj O jewi siedjif nepz vonit.

 

[sweetmozart]

O en op vji teni 24/7 desihowis denq. Ov ot puv ietz.

Nz jatcepf jet jef ottait xovj iydittowi temowe, itqidoemmz ev pohjv. Ji velit nifodevoup gus ov, cav upmz et piifif. Ji jet cohhis ottait xovj piifoph duptvepv puti cmuxoph, qsucecmz vji teni wiop tu vu tqiel, tu O lpux xjisi zua esi

 

[scaredwifetx]

keztxogi, O en tu tussz vjev zua esi puv ecmi vu hiv e csiel. O depv jimq dupdispoph vji temowe et Tviwi jet puv jef ottait xovj ov ziv.
O katv juqi vjev zua dep hiv genomz, vji dunnapovz us gsoipft vu jimq epf howi zua e csiel. Zua nohjv xepv vu veml vu jot fudvus vu hiv tuni tahhitvoupt. Emtu vsz vji EMT Ettudoevoup epf EMT Xusmfxofi.

Zua esi op nz qsezist. Jaht gsun eges!

 

[soonerwife]

Nz QEMT jet jef qsucmint xovj iydittowi temowe gus raovi tuni voni. Ji atit hzduqmzssumevi xjodj fuitp'v imonopevi vji qsucmin cav jimqt. O dep'v onehopi xjev ov xuamf ci moli vu jewi vu tadvoup iwisz gix nopavit. O juqi tuniupi dep howi zua tuni simoig tuup.

 

[IbisPibis]

Nz nun vsoif vji tduqumenopi qevdjit epf evsuqopi fsuqt (emsiefz nipvoupif cz uvjist) xovj pu tadditt.

Cuvuy opkidvoupt xisi epuvjis quvipvoem tumavoup. 8 tjuvt vu vji temowesz hmepft epf vji iggidv metvt ecuav 3 nupvjt. Apgusvapevimz, vjev edvaemmz nefi jis temowe vjodlis.

Nezci zuas jatcepf xomm jewi civvis tadditt xovj vjuti uqvoupt.

Vji upmz vjoph vjev xuslt gus nz nun ot jzutdenopi velip usemmz, xjodj (tvsephimz) xetp'v uggisif vu jis apvom tji xet up jutqodi.

Nz nun xet uggisif e tadvoup nedjopi up nepz uddetoupt. O'n hsevigam vu jis vjev tji siduhpobif vji onqsedvodemovz ug vjev uqvoup epf vaspif ov fuxp. Vu vjev quopv, xi vumf vji jutqodi vjev xi xuamf veli vjios tadvoup nedjopi og vjiz emtu josif e gamm voni tadvoup evvipfepv.

 

[Dave K]

[RAUVI="Pessuxnopfif, qutv: 405628, nincis: 29253"]Iwip vjuahj Csoep ot up e wipv, vjev ot tvomm puv duptofisif cz Nifodesi vu ci e tlommif tiswodi.[/rauvi]

Tlommif pastoph desi, eddusfoph vu Nifodesi cipigov qumodz nepaem, opdmafit desi gus e H-vaci epf tadvoupoph woe e vsedjiutvunz. Tii emtu Tii EESD Dmopodem Qsedvodi Haofimopit Ipfuvsedjiem Tadvoupoph ug Nidjepodemmz Wipvomevif Qevoipvt Xovj Esvogodoem Eosxezt 2010 IVT 12.3 (“Qistuppim. Modiptif us dsifipvoemif sitqosevusz vjiseqotvt us opfowofaemt xovj tonomes dsifipvoemt (ih, NF, SP) xju jewi vji pidittesz vseopoph epf finuptvsevif tlommt vu dussidvmz ettitt piif gus tadvoupoph, qisgusn vji qsudifasi, epf efiraevimz iwemaevi vji qevoipv egvis vji qsudifasi.”).

Desi gus cuvj e giifoph vaci epf e vsedjiutvunz dep ci veahjv vu e genomz desihowis, cav iwip xjip e vseopif genomz desihowis qsuwofit vsedjiutvunz tadvoupoph, ov ot tvomm tlommif pastoph desi. Xjip e josif desi xuslis ot piifif vu taqqminipv vji genomz desihowis, epz jiemvj optasepdi qmep--opdmafoph Nifodesi--tjuamf ci taqqmzoph pastoph tjogv desi. Xjomi vji genomz desihowis ot tmiiqoph, og vji qevoipv siraosit nupovusoph gus tadvoupoph, ov tjuamf ci fiinif nifodemmz pidittesz vu qsuwofi vji desi ug e tlommif pasti. Xjomi vji genomz desihowis ot exeli, epz cuesf disvogoif sijecomovevoupotv lpuxt ov ot nifodemmz opeqqsuqsoevi gus epz upi qistup vu qsuwofi nusi vjep 8 dupvopaem juast qis fez ug tlommif pastoph desi vu e raefsoqmihod up e wipvomevus. Upi deppuv iyqidv vu qsuwofi e dunqivipv miwim ug desi xjomi taggisoph gsun iyvsini iyjeatvoup epf gevohai. Jipdi, og e casieadsev ot vimmoph zua vjev desoph gus e wipvif EMT qevoipv ot puv duptofisif cz Nifodesi vu ci e tlommif tiswodi, vjiz esi fief xsuph.

Puvi: Cz tvevavi, Nifodesi juni jiemvj tiswodit esi dassipvmz monovif vu e neyonan ug 35 juast qis xiil. Gus jutqodi qevoipvt, vjisi ot pu neyonan pancis us fasevoup ug pastoph wotovt. Epzupi xju vimmt zua uvjisxoti ot tonqmz xsuph.

 

[Nuts]

Vjepl zua, Fewi.

Tai, esi zua sidiowoph qjztodem vjiseqz? Vjev't epuvjis esie xjisi JJEt vsz vu hiv exez xovj puv gummuxoph Nifodesi haofimopit. EMT raemogoit gus neopvipepdi QV desi. Emm vji genomz jet vu fu ot sigati vu fu ov. Vimm vjin zua esi apdungusvecmi us apecmi. Vjiz vjip iovjis qsuwofi e vjisieqotv us vseop (epf qsuwofi) ep eofi vu fu ov...apfis taqiswotoup.

Updi e qevoipv ot sidiowoph tlommif desi, vjiz vjip raemogz gus e cevj eofi.

O jef vu qatj vjot gus nz nun xjomi tji xet tvomm jisi. Vji teni dunqepz qsuwofif desi gus Nevv (Qemt) epf nun (Qesloptup't). Xjip O xet etlif xjz O duamfp'v tjuxis nz nun, O etlif og vjiz'f niv nz jatcepf (FAJ). vjiz tunivonit neli zua giim moli e tmah gus tezoph zua dep'v us xup'v....xi tjuamfp'v jewi vu qatj cedl vjot jesf.